Robert Wood Johnson Initiative: Improving End-of-Life Care in ALS

1. Robert Wood Johnson Initiative:Improving End-of-Life Care in ALS Hiroshi Mitsumoto, M.D. Eleanor and Lou Gehrig MDA/ALS Center The Neurological Institute College of Physicians and Surgeons of Columbia University

2. The Reality

3. Institute of Medicine Dimensions and Deficiencies • Too many people suffer needlessly at the end of life, both from errors of omission and from errors in commission. • Legal, organizational, and economic obstacles conspire to obstruct reliably excellent care at the end of life. Approaching Death, Nat’l Academy Press, 1997

4. Institute of Medicine Dimensions and Deficiencies • The education and training of physicians and other health care professionals fail to provide them the attitudes, knowledge, and skills required to care well for the dying patient. • Current knowledge and understanding are insufficient to guide and support the consistent practice of evidence-based medicine at the end of life. Approaching Death, Nat’l Academy Press, 1997

5. Health Care Facts in USA • American people are not happy about how their loved ones or friends die – • lack of a “good death” • Highly inadequate use of analgesics in the EOL • Medical expense is staggeringly high, leading to impoverished families • Unacceptable, statistically significant, risk factor associated with minorities, the elder, and the poor

6. Health Care Predictions in USA • At any scenario predicted, the uninsured will not disappear but grow (30 to 65 million) as will the underinsured • 40 millions are now either ill or disabled, which is expected to increase in the next decades • The elderly population is also rapidly growing • 1.6 million people live in nursing homes today; in the next 30 year, the number will rise by 5.3 million

7. Serious Issue 1 “In recent surveys, support for legalizing physician-assisted suicide is running between 60-70%. This is dramatic evidence of peoples’ anger, and fear. The public is fed up and wants to take back responsibility for their own lives.” “In the circumstances in which people suffer with their illness-related disability, their symptoms, and sense of being a burden to society, the choice of suicide may be entirely rationale, but it is all the more tragic…” Ira R. Byock, 2001

8. Serious Issue 2 “It’s pretty clear that at least some of the medicalized misery that dying has become is self-inflicted. As Pogo once observed, ‘We have met the enemy and he is us.’ In truth, a collective denial of dying, death and advancing morbidity is the constant that runs through the confused and conflicted state of affairs that typifies the American way of death.” Ira R. Byock, 2000

9. Palliative Care or End-of-Life (EOL) Care is an Important Alternative

10. End of Life – ALS Database • Of 373 patients who died, 56% died at home, 19% in hospital, 7% in hospice • 47% who died at home used hospice facilities • 89% recorded as dying peacefully • 66% used medications to control pain, distress • 37% received oxygen in terminal period • Advance directives in place in 90% of cases; followed 97% of the time Bradley et al. 2001 and ALS CARE Database

11. Robert Wood Johnson Initiative RWJ Foundation National Program Office Ira R. Byock, M.D. Project Workgroups Independent project ALS Association Project Project ALS Peer Workgroup Project

12. Stanley Appel, MD, Houston, TX Josh Benditt, MD, Seattle, WA James Bernat, MD, Lebanon, NH Gian D Borasio, MD, Munich, Germany Mark Bromberg, MD, Salt Lake City, UT Ira Byock, MD, Missoula, MT Alan Carver, M.D., NYC Lora Clawson, RN, MSN, Baltimore, MD Maura Del Bene, MS, RN, NP-P, NYC Wendy Johnston, MD, Edmonton, AB, Canada Edward J Kasarskis, MD, Lexington, KY Susan LeGrand,MD, Cleveland, OH Mary Lyon, RN, MN, Calabassa Hills, CA Raul Mandler, MD, Washington, DC J. McCarthy, Calabassa Hills, CA Robert G Miller, MD, San Fransisco, CA Theodor L Munsat, MD, Boston, MA Daniel Newman, MD, Detroit, MI Robert Sufit, MD, Chicogo, IL Rup Tandan, MD, Burlington, VT Andrea Versnyi, CSW, NYC ALS Peer Workgroup

13. The Mission of ALS Peer Workgroup • Development of an accurate description of the state of the field • Creation of a road map to improve EOL • Dissemination of Workgroup results • Going beyond dissemination

14. Dissemination of ALS Workgroup Recommendations Policy makers Health care payers NIH Funders Health care organizations ALS Peer Workgroup Voluntary disease organizations Medical educators RWJ Foundation Healthcare professions National program office Patientsand caregivers

15. Work in Progress • Inauguration Meeting at Airlie House, 5/1999 • Overall goals, plan, process, and subcommittees • Conference calls among the subcommittees • Exchange the information via RWJ website • Midterm meeting at Aarhus, 11/2000 • Subcommittee meetings in the summer • Wrap-up meeting at Scottsdale, 11/2001

16. Palliative Care End-of-Life Care

17. Palliative Care WHO Definition “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for patients and their families…. palliative care…affirms life and regards dying as a normal process…”

18. When does the end of life begin? At the time of the diagnosis of ALS made? Sometime later, but when? Curative Palliative Dx Time

19. EOL and Palliative Care Medical Education B E R E A V E M E N T Symptom Management Hospice Care D E A T H Patient — Caregiver — Family L i f e C l o s u r e B e r e a v e m e n t S p i r i t u a r i t y Counseling, Support group

20. The Operational Definition of EOL in ALS6 “Triggers” • The patient or family asks – or “opens the door” for end-of-life information and/or interventions (elicited or spontaneous, verbal or non-verbal), or • Severe psychological and/or social or spiritual distress or suffering, or • Pain requiring opiates, or • Dysphagia requiring feeding tube, or • Dyspnea or symptoms of hypoventilation, forced vital capacity at 50% or less, or • Loss of function in two body regions

21. Clinicians Must Review Their Own Experience and Attitude • Clinicians first must come to terms with their own deaths • Clinicians’ own attitudes about dying and choices they may or they may not make for themselves

22. End-of Life Subcommittees • Ethics, Communication, and Decision Making Wendy Johnston, MD, Chair • Psychosocial Care Mark Bromberg, MD, Chair • Access of Care, Cost of Care, and Knowledge/ Education Rup Tandan, MD, Chair • Symptom Management All members

23. Ethics, Communication, and Decision Making Physicians • Lack of familiarity of how to discuss difficult issues: • Dx of ALS, need for assistive devices, end-of-life discussions • Too much too late is a consistent issue for ALS care • Reluctant to treat the end of life patient as they are “futile” • Lack of knowledge on use of pain-control medications and the issue of withdrawing life-sustaining treatment • Lack of knowledge about ALS in other specialties: • PEG, NIPPV, Trach, Hospice care, etc.

24. Ethics, Communication, and Decision Making – Recommendations • Practice • Improve physician’s communication skills with patients/caregivers • Improve physician’s comfort and familiarity with end-of-life issues • Promote a patient bill of rights • Patients need access to good “standards of care” • Clinical Research • Analysis of timing, quality, quantity, and nature of the communication (between physicians and patients) and outcomes • Policy • Improve the educational program at all levels

25. Psychosocial Care • Bereavement • Spirituality • Quality of Life • Family Caregivers • Overall Psychosocial Intervention • Hope while dying • Coping and counseling • Sexuality & intimacy • Needs of children • Dying & life closure • Ethnic and cultural difference

26. Bereavement • Bereavement is a process that begins when something is lost or someone dies; grief is the feeling of sadness associated with the loss; and mourning is the expression of sorrow and grief. • Uniqueness of bereavement in patients with ALS (progressive with loss of function) • Uniqueness of bereavement in caregivers • Bereavement vs. relief and guilt • Research: basic data needs to be accumulated in patients and their caregivers

27. Spirituality • Present Status • Spiritual needs are still largely neglected even in the context of end-of-life care • Practice Recommendations • Incorporate spiritual care as an integral component of palliative care for the patients and their families by the multidisciplinary ALS team • Professional involved in the care of patients with ALS should have spiritual care education

28. Spirituality • Research Recommendations • Improve the evidence base for spiritual care interventions • Policy Recommendations • Focus efforts on improving familiarity and education of health care professionals on spirituality issues • Incorporate spirituality into medical school curriculum

29. Quality of Life (QOL) • Current Status Quality of Life instruments have not been incorporated in patient care. • Practice Recommendations • Consider using QOL instruments. • The McGill and the SEIQoL are validated • Research Recommendations • Need for further validation of QOL instruments at end of life and investigate whether QOL-guided care provides improved outcomes

30. Family Caregivers • Present Status • Caregivers are mentally distressed and physically exhausted • The Ideal Goal • Caregiving offers a rewarding experience and improves QOL of patient’s and caregiver’s wellness • Practice Recommendations • Proactive caregiver attention (education, counseling, and support) prevents caregiver burden

31. Family Caregivers • Research Recommendations • Initiate prospective studies to develop caregiver risk assessment for those at high risk (high potential for distress/burden) and • Develop proactive caregiver care programs and assess over the long-term to measure changes in outcome • Develop caregiver’s QOL and burden scales • Policy Recommendations • Provide Medicare and other insurance reimbursements for family caregivers who provide end-of-life care and • Provide reimbursement for physicians who care for the caregivers of their patients

32. Access of Quality Care • Present Status • Lack of coordination of multidisciplinary care • Patients and caregivers are dissatisfaction with fragmented care • Practice Recommendations • Develop a standard end-of-life care algorithm • Research Recommendations • Investigate the ideal timing of referral to hospice in ALS • Policy changes • Establish a “Center of Excellence” certification program • Modify and expand Medicare guidelines for hospice use for patients with ALS

33. Final Report INTRODUCTION: • A case statement describing the need for the Workgroup and why the group convened • The convening process WORKGROUP FINDINGS • Identification of existing resources • Identification of gaps RECOMMENDATIONS TO FIELD • Practice Recommendations • Research and program development recommendations (clinical, education, health systems) • Policy recommendations

34. Dissemination of ALS Workgroup Recommendations Policy makers Health care payers NIH Funders Health care organizations ALS Peer Workgroup Voluntary disease organizations Medical educators RWJ Foundation Healthcare professions National program office Patientsand caregivers

35. Summary and Conclusions • End-of-life care in ALS is part of the RWJ’s continued commitment in promoting excellence in end-of-life care • ALS Association functioned as a facilitator and assembled the ALS Peer Workgroup • We looked at the end-of-life care in ALS in the broadest possible ways: • Current state clinical care • Ideal state of care • Recommendations • practice • research and program development, and • policy

36. Summary and Conclusions • Seek endorsement from American Academy of Neurology and other ALS-related organizations • This effort will be highly complementary to the AAN Practice Parameter • Dissemination plans include: • a consensus or opinion paper, • special journal issues on end-of-life care in ALS • patient and caregiver educational material and management booklets. • Common goal – Improve the end-of-life care in ALS